Saturday, April 6, 2013

All for naught

Luke's 2nd trimester report card came home with him last week. It is broken down into multiple areas of assessment, and each area is rated from 1-4. The report card concludes with the teacher's comments.

"Luke is doing a great job in kindergarten. He can identify 18 of the 18 upper and lowercase letters and letter sounds that we have learned so far. He can segment and blend words and read high frequency words. Luke is on unit 20 of the kindergarten Read Well curriculum. The goal is for students to be on unit 20 by the end of the year. Since Luke has almost met that goal, he will begin working on the first grade reading curriculum after he passes unit 20.* He is making great progress!

His math skills are just as strong as his reading skills. He can count up to 20 objects with 1:1 correspondence, identify numbers to 20, count to at least 50, count backwards from 10, and order numbers from 1-10. He can also compare 2 sets of numbers by telling which number is more or less and he can solve addition and subtraction problems with manipulatives.

Luke writes his first name with a capital letter at the beginning and with lowercase letters for the rest of his name. He can draw a picture and write a sentence based on a prompt.** The students were given a spelling test in which they were asked to look at a picture and write the word that goes with the picture (for example, write the word "cat" under the picture of a cat). Luke spelled 6 of the 9 words correctly. On the 3 words his did not spell completely correct, he was able to write most of the correct letters in the word (for example, "tigr" for "tiger").

Luke is very aware of classroom rules and works very hard to follow the rules and directions. It can be upsetting to him when other students are not following the rules. Luke is often one of the first students to follow through with teacher directions.*** He will often encourage other students to follow the rules and directions as well. Luke is kind and friendly to all students in his class. He takes his time and does his best work. He typically does a wonderful job of working quietly and independently. I really enjoy having Luke in my class."

Shamelessly, this is completely a brag post, but it's our reality that data shows kids with congenital heart disease can more often struggle in school and have a higher rate of learning disabilities. Since Luke hit school age, each cardio appointment includes questions around his learning and any concerns we may have.

"As a group, children with CHD have a higher likelihood of academic, behavioral and coordination problems compared to children without CHD. This does not mean that all children with CHD have these difficulties, but the number of children is much higher than that seen in the general population. These problems seem to be more prevalent in children with complex CHD: CHD severe enough to require surgery in the first few months of life ..." (The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects, The Children's Hospital Of Philadelphia Cardiac Center)

So I'm allowing myself to brag today.

*Since the report card was printed, Luke passed his last kindergarten test and gets to start first grade reading curriculum!

**The prompt was, "If you could have any pet, what pet would you want?" Luke's sentence? "I want a bird." Not happening, buddy.

***I wish he was as quick to follow instructions at home as he appears to be at school!

This report card is such a message to me about preemptive worrying. We (speaking for myself) spend so much time worrying about that which may or may not take place. The question of "What if ..." is a thief. Pure and simple. Did you know the old English word for worry actually derives from the word "choke"?

This message, fittingly, is one I need to be reminded of since I've been catching myself doing a lot of preemptive worrying after Luke's last cardio appointment.

"What if his sats don't bump back up?"
"What if he needs the Fontan this summer?"
"What if Seattle hasn't found a new surgeon?"
"What if we're doing the wrong thing by waiting?"
"What if surgery kills Luke's spirit? What if it changes him?"
"What if his Fontan fails?"

And to be as honest as I can be:

"What if he doesn't survive?"

I have had moments in the last weeks where I'm literally breathless trying to figure out how to go back to the hospital. I broke down with a friend recently and all I could say was, "I can't do it. I can't do it." Thank the Lord for my friend, who talked me down from my cliff of panic, helping me remember what I know but what in that moment had been stolen from me:

“Fear not, for I have redeemed you; I have called you by name, you
are mine. When you pass through the waters, I will be with you; and
through the rivers, they shall not overwhelm you; when you walk through
fire you shall not be burned, and the flame shall not consume you.For I
am the LORD your God, the Holy One of Israel, your Savior." Isaiah 43:1-3

As I read this, it hit me afresh: God is promising His presence and strength as you are passing through the waters; when you walk through fire. Not before. My friend reminded me that of course it feels like I can't do it right this minute because I'm not in "it" right this minute.

How difficult it is to find peace in the line between thinking about what is to come and worrying about it. The Bible doesn't ever say not to be thoughtful or mindful about the future. It's not sin to research my son's heart defect. It's not wrong to ask questions or think through possible scenarios. My husband and I had a conversation just last week about the timing of Luke's next surgery and whether having it this summer may benefit him because we know his first grade teacher so well.

If we are honest with ourselves, though, we know when we have crossed from thoughtfulness to worry. And for me, that's when I have to pray. It is easy for me to go too far the other way, stuffing any thought or emotion that bubbles up to the surface. Which again, is why prayer is so key. I have to intentionally give God what I am "choking" on, resettling in my mind Who is in control.

They can be as brief as, "Lord, take this worry from me." Or as simple as, "Lord, You know."

What a discipline this is! Sometimes as soon as I give it over, I take it back from Him. I think that is why God wants us to know His Word so well, to have it written on our hearts. So we can replace the chokehold of worry with the truth of His love and care for us.

"There you saw how the Lord your God carried you, as a father carries his son, all the way you walked until you reached this place." —Deuteronomy 1:31

About Us

Roger and Jesse welcomed Lukas Scott into our lives in January of 2007. He came into this world with only one ventricle, but with incalculable lessons to teach those who love him. This blog is intended to keep family and friends updated on Luke's journey, and in the hopes of passing on the encouragement, joy and deeper understanding of God's love we receive by knowing Luke.